The Great Pixie Grow Out Saga: Two Years and Counting

haircut may 2015

It’s a shocking before and after, no? It’s been forever since we’ve had a hair post.  I got a haircut this week, but wasn’t hoping for any dramatic change as I continue to work  through the grow out process. (Don’t you love the red lipstick, though? It’s my Nars Cruella lip pencil that was part of my birthday gift from Sephora!) It’s hard to remember, but this was my hair two years ago:

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Super short and white blond. I actually quite love that look.  Then as it grew back in, it got so much darker. I assume that it came back the color my hair always was, but my hair has always gotten lighter from the sun, and the new hair hadn’t been in the sun at all.

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So I quite like it that way, too, though it was awfully dark. (And look how nice my fingernails look. I really should polish them more.) Sorry no lovely professional photos of my new hair, but Dragan and I agree that it’s getting back to its old color.

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The ends are getting lighter, he commented it looked like we had done an ombre color treatment on it! I’m still working on getting it styled the way I want it– it’s so hard to work with hair in this in between length. Apparently, my hair “wants to behave” and adopt a round newscaster-y coif, so I’m working with products to give it a more disheveled, edgy look. So I’m currently on the lookout for some Redken Fashion Waves 07– a sea salt/surf spray to texturize it. Why can’t everything be available on Amazon prime? (And for the record, I took that last picture at a very long stoplight in Georgetown. I wanted to get a pic of the hair before it lost the “just left the salon” look!)

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Gettin’ My Groove Back | Running After Cancer

run may 2015

I managed to run all through chemo. I didn’t go as fast, or as far, or nearly as frequently as when I was in top shape, but I had cancer. So I was winning. Then surgeries started creeping in, and I LOVE my plastic surgeon, but he’s a stickler about limiting activity after surgery. The six week ban on anything that causes you to bounce or break into a sweat probably isn’t necessary, but he wants to ensure the best outcome possible. When it comes to plastic surgery, I’m all for a good outcome, so I obliged.

We all know that breaking a habit is far easier than starting a new one, so at the end of each six-week doctor imposed hiatus, it took a while to get back into the groove of a regular morning run. And then as soon as I’d gotten back in the swing of things, I’d need another surgery. Training interrupted by surgery has kind of been my go-to excuse for the last two years. But just this week I realized that my most recent surgery was in June of last year. That means I’m almost a year surgery-free! Which is awesome. But also, that fact makes my go-to, perfectly respectable excuse completely pathetic. There’s no reason I should be sleeping in far more days than I’m getting out for a run.

Enter the plan to get back my groove. It is a multi-pronged approach:

  • Run with a friend: Accountability helps. And so does companionship. Last week I made Emma Clare run with me before Turner’s baseball game. I have a neighborhood friend who I run with before the kids head to school– our plan is twice a week. (When life doesn’t get in the way.) And then Sally and I have decided to resurrect our chemo runs, meeting in Old Town once a week or after a shopping outing, and have even added a third friend to that mix.
  • Make a goal: I’m completely out if I don’t set myself a goal. But with a (reasonable) goal, I’m a fierce competitor. So I’ve got a couple of friends in on it, and we’re doing a minimum of three runs a week and reporting back. I kind of wanted a mileage goal for myself, too. I decided on a May marathon– not that I’m going to run a marathon at the end of May (ha!) but that I’ll run a total of 26.2 miles in the month of May.  I’m off to a pretty strong start, though, so I am thinking I might need to up that goal…
  • Power through: This is the hardest. The weather yesterday morning was perfect for a run, the trails were packed, and the trees were lovely. And my run was abysmal. I’m not fast, so it doesn’t bother me to get passed. But yesterday, I got passed by a guy running in a cotton tee and dockers. (Hard to tell myself that he passed me because he puts in a lot of miles when he’s running in a pair of chinos.) Also, I got passed by a woman at least twenty years my senior, who, based on the fact that both knees were taped and she had a terrible gait, was running in a significant amount of pain. Hard to keep going after grandma limps by. The one lucky break? One of the top candidates for neighborhood gazelle joined the path quite a bit ahead of me, so she can keep saying with conviction that she’s sure I’m not that much slower than her. Nevertheless, I finished the run and was determined today would be a better day.  I had actually set up two running dates. First one got cancelled last minute because my partner’s dog hid one of her shoes. She never did find it! Second one cancelled due to that partner’s stomach bug. (Apparently, it’s not a great thing to be my running partner!) Thankfully, though, I powered through and went out solo. The music was great (thanks, Spotify!) and I spent some time thinking through a phone call I have later today.

So after a few false starts, I managed to make it a respectable week. What about you– how do you get your groove back and restart a cast off habit?

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AACR Annual Meeting Report #2: The Poster Session

IMG_2462.2015-04-20_133455While a very few people are asked to give talks at AACR each year, the vast majority of the science presented at the conference is done by the person who actually does all the work– the graduate student or post doc– at a poster session. It’s kind of like a grown-up science fair, but without all the baking soda and vinegar volcanoes. Literally thousands of people put up a poster on a board for four hours, talk to other scientists about their work, and then take it down so several more thousand people can start all over again in the afternoon. What makes a poster session so great is that you have the opportunity to actually talk to the investigator, to interact, ask questions, make connections. These are great opportunities for beginning collaborations between scientists. During two of these sessions, the advocates had a row to put up our own posters. I would love to see us be able to mix in more with the scientific posters to perhaps get a little better traffic, but it was still a tremendous opportunity to present a poster at such a big meeting.

The poster I presented was a true collaborative effort, put together from ideas from the other ladies in the group at Georgetown. In truth, I was hoping to have an audience of scientists, to sell them on the virtues of including advocates in the research process. Thus, our poster described the credentials and the diversity of our group. The youngest in our group are in their mid-thirties, and we also have members in their seventies, and our members represent many different professions.  I’m the most recent diagnosis, but we also have one (never diagnosed) high risk woman and a couple of ladies who are over twenty years out from their diagnosis. The women in our group have worked very hard to learn an incredible amount about breast cancer; many have attended the National Breast Cancer Coalition’s Project LEAD as well as other smaller educational activities. I wanted to emphasize that not only were were diverse and passionate, but that we are a group of educated advocates. But I knew that there was one thing that would be even more important to scientists than education: funding. In fact, quite a few in our group have served as full voting members as consumer reviewers for the Department of Defense Breast Cancer Research Program, and others have also reviewed for Komen, NCI, and state programs in Texas and New York. No one was too interested in reading our publication history, but they were all very impressed to see that members of our group have served on ASCO guideline review panels as well.  Not only are we capable of understanding some of the science and representing a broader patient population, we have done it in some pretty high profile places!

Let me tell you friends, if you have to present a poster for four hours, this is the kind you want to have. Everyone who stopped by listened intently and was thoroughly impressed by the group that Ayesha, our fearless leader and scientific adviser, has built. Many advocates wanted to know how to start such a program in their community, and, as I’d hoped, the scientists were impressed (surprised, though impressed!) by the credentials our members possess.

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Since the conference was nearby in Philadelphia, I was lucky enough to have some of the ladies from the Georgetown group join me for the poster session. There were definitely times when we had more than one discussion going, so it was good to have extra people on hand to chat.But frankly, having five of us there was even a more impressive display of our commitment to learning about cancer and becoming more effective research advocates. And selfishly, I loved having the opportunity to get to know the ladies better– two hours a month in a meeting with a full agenda is not the quickest way to build a relationship!

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And since we’re talking relationships, it’s worth mentioning that we were lucky enough to have a few VIP scientists stop by our poster.  Robert Clarke, PhD, DSc, is the Co-Director of the Breast Cancer Program at Lombardi, and Ayesha Shajahan-Haq, PhD is the Georgetown faculty member who first dreamed of a group like ours at Georgetown and then worked tirelessly to make it happen. She established the group four years ago, and we owe her a tremendous debt of gratitude. And perhaps even more exciting than presenting my poster in the advocate row at AACR is the fact that it now hangs proudly in the hall of The Research Building (such a fancy name for a place where people do research, no?) just outside of Robert Clarke’s lab. Perhaps hanging there, our poster will finally get a good audience of scientists, after all.

I was privileged to participate in AACR as a part of the Scientist <-> Survivor Program. Read about my SSP experience here.

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AACR Annual Meeting Report #1: The Fun Stuff

I have to say that heading back to AACR (the annual meeting for the American Association for Cancer Research) after all these years was a bit surreal. In the past, I always went with a group from Georgetown– students from other labs and of course at least a person or two from my own lab. Of course, we all had different priorities for the science we wanted to see, but I had a built in group for dinner or someone to sit with at the big plenary lectures. I’m good at being independent, but five days without built in friends was a little daunting.

And here is just part of the beauty of the Scientist <-> Survivor program run by the AACR: built in friends, and since they provided most of the meals, someone to eat with. There were roughly thirty cancer survivors or patient advocates in the program, and there were also a handful of scientists or oncologists who served as mentors to help guide us through the sheer volume of the conference.

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They divided us into smaller groups to work on a specific project, and I was thrilled to already “know” two of my fellow group members, as I’d bumped into them on the #bcsm twitter chats. (And the win goes to social media!) Each group was assigned an advocate mentor who’s been through the program before (this was the program’s seventeenth year!) and a scientist mentor who can explain any science-y questions and help group members find the sessions that are the most interesting for their point of view.

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They took super good care of us.  As I mentioned, they fed us very well had lots of sessions set up just for the SSP program.  Some of the ladies from the advocacy group at Georgetown came for a couple of days, and the lovely Karen, who took such great care of all the SSP participants, invited them to join a few of the sessions. Their absolute highlight was Dr. Carolyn Compton, who presented Cancer Mini Medical School.  Not only did Dr. Compton teach them a lot about cancer, but she did it with such enthusiasm that no one even noticed she’d been presenting to us for over three hours and straight through dinner! (Except for maybe Dr. Ann Barker, who started the program seventeen years ago, and kept a watchful eye on the clock!)

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Besides Dr. Compton’s presentation, they had scientists lined up to speak to us in some of the most exciting areas of cancer research. Not only were these scientists brilliant, they were excellent communicators and were thrilled to share their passion with the advocates.  We learned from the experts about circulating tumor cells and the possible future of liquid biopsies, big data– the accumulation of petabytes (I don’t know, it’s a LOT) of data from the sequencing of tumor genomes, and harnessing the immune system to fight cancer.

As a scientist, I went to these conferences and attended lots of sessions, talking to lots of scientists about their work.  As an advocate with the SSP program, I quickly found myself torn between a speaker or potentially interesting poster and a special SSP session or working group meeting. Carlos Arteaga won out over the first hour of mini med school (I do have a cancer degree, after all) but I’m still a little disappointed I missed hearing Bert Vogelstein’s talk. Yet, I realized that most scientists are really looking at everyone else’s science for a new way to look at their own research. Maybe they’re looking for the technique that will get them over the impasse they’ve encountered, or they’re looking for a new collaboration. I wasn’t looking for a new technique, but a collaboration? Maybe. So I made sure to invest my time in relationships this year at AACR.

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And so I met a lot of people for coffee, which means I drank a LOT of coffee. (Which, given the 7am sessions and the receptions lasting until ten or later, I needed!) I was thrilled to find that the Reading Terminal Market was just across the street from the convention center.  I had more than a couple cups of coffee (brewed on site!) and hand made caramel doughnuts while I chatted with friends, old and new. I got to know the ladies who came up from the Georgetown group so much better, and I was thrilled to catch up with my first graduate mentor, talking kids– dance classes, gymnastics, and what they want to be when they grow up. (Kids really are the universal language.) Maybe even better was the opportunity to meet a whole brand new set of people, a few new scientists, but also people involved in public policy, research advocacy, health and wellness advocacy, fundraising, science writing, and I even met an editor of a brand new scientific journal. It was great to connect with the other advocates, hearing their stories, not just about their cancer, but about what they’ve done since being diagnosed. I was so impressed with how the non-advocate types I met– journalists, policy people, and even scientists– were genuinely interested in finding ways to incorporate the advocate’s perspective in their work.IMG_2487.2015-04-22_011131

At the end of the day, I made a lot of new friends, collected a big stack of business cards, and even got a fancy certificate! Stay tuned for the poster update and a little summary of some of the science I saw, too.  It was a jam packed five days, and I couldn’t possibly get everything into a single post!

 

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Field Trip #2 | AACR Annual Meeting in Philadelphia

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Back in the day, when I headed in to the lab at Georgetown, AACR was the meeting to go to. It’s the annual meeting of the American Association for Cancer Research and it’s a huge meeting where scientists present their data. Ideas are shared, collaborations are built, relationships are made. And since I went to meetings in New Orleans and San Francisco, some very delicious food was eaten! I haven’t been in years– since graduate school.  AACR is working to increase the role of patient advocates in the scientific process, and so they sponsor the Survivor<->Scientist Program.  It gives a cancer survivor the opportunity to attend the meeting, getting to know other advocates and gaining the benefit of a scientist mentor to help make the meeting a little easier to understand.

This year, I am honored to be a part of this program on behalf of the group at Georgetown. Each SSP advocate is required to present a poster at the meeting.  It’s sort of like a grown up science fair where thousands of researchers stand by huge posters of their work.  In addition to being able to see talks by some of the greatest minds in cancer research, I’ll be able to peruse posters of the latest work going on in labs around the country and across the world.  And for a four hour time slot on Monday morning, I’ll be able to share my poster with all of them. (Or at least those who wander by!)  I worked with the ladies in the group at Georgetown to come up with a poster summarizing the role of our research advocacy group at Georgetown. Just like those dreaded group projects from high school, working with so many had its struggles– technology, waiting on information, trying to get all those ideas in! But not only am I happy that it’s done, I really do think it’s better for all the input of the group. They had some great ideas and I think the finished product will represent the group well.

I hope I’ll get to see some exciting research.  I’m looking forward to meeting so many new advocates as a part of the SSP program, and I’m hoping I might run into a few familiar faces while I’m there. A few of the other ladies from Georgetown will be joining me for the poster session, and above all, I hope that we will have the opportunity to broaden the perspective of research advocacy in the cancer research community.

So now just a few things left to do before I leave… I’ll pick up the poster tomorrow. Business cards are ready to go. Fingers crossed that Sam Torrey managed to repair the shoes my dog chewed up (oh, the horror!) so they can get packed along with everything else.  And then I’ll need to do a little cooking so that Clay can single parent it and still do a little of his own work, too.  You’d better believe I’ll appreciate a few days off of constantly making those kids food!

And if you happen to be one of my science friends or one of my advocate friends and will be at AACR, let’s get in touch!  My poster session is Monday morning, add it to your itinerary!

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Field Trip: FDA Breast Cancer Patient Focused Drug Development

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I think it all the time.  I am so happy to live where I do.  Last week, after running a couple of errands, I headed up to spend the afternoon at the FDA White Oak campus in Silver Spring, MD. `I didn’t have to hop on a plane, get a hotel, and try to arrange my family’s schedule so that I could be gone for several days.  I just headed over after stopping at Tyson’s. It’s a brand new campus and everything is so fancy– much different than my visits to the FDA buildings that were on the NIH campus when Clay worked there.  The FDA is conducting meetings over a five year period on different disease sites, inviting patients to influence the drug development process.  I was there for the breast cancer meeting (obviously!) along with roughly fifteen to twenty other patients and patient advocates.  The rest of the audience was made up of academics and pharmaceutical representatives who were eager to hear our comments.  (They were not permitted to participate in the discussion, they were just there to listen.)
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I thought the meeting was well organized and well run, and the FDA staff and reviewers listened very attentively and asked thoughtful questions.  Even when the discussion started to get off course, they managed to respectfully and gently guide us back– and that’s no small feat!  I had three main takeaways from this meeting.  First, I continue to be in awe of the passion and energy of the metastatic breast cancer community.  I sat with several ladies from the Metastatic Breast Cancer Network and the Metastatic Breast Cancer Alliance.  It makes sense that the women who were chosen to be on the panels were mostly metastatic patients– they’ve had far more treatments, so of course they’ve had to deal with more side effects.  Many of these ladies talked about overwhelming fatigue, pain, and the stress of trying to make sure they’ve scheduled their “life” to fit within their two or three week chemo cycles.Their cancer cards are still shiny– though be it a bit worn– and no one would call them selfish for wanting to stay at home– either to feel sorry for themselves, or just to spend as much time as possible with their families.  And yet they traveled from Chicago, New York City, Texas, California– all to share their stories, hoping they will make a difference, if not for themselves, for those yet to be diagnosed with breast cancer.  They spoke with candor about things most people would rather hide– diarrhea, depression, sexual intimacy.  They shared the joys of being without evidence of disease after treatment for multiple metastatic lesions, and they shared the disappointment of recent disease progression. While I know one person’s story is always just one person’s story, I was reminded of the power of an individual’s personal narrative.

The other two things that struck me were two of the questions posed by the FDA panel.  They wanted to know from the patients– What would our dream drug look like? Um, one pill, no side effects, totally and instantly curative.  OK, I know that’s not what they were going for!  And that’s not what anyone said, either. The most poignant answer came from Shirley Mertz, from the Metastatic Breast Cancer Network.  I’m totally paraphrasing here, (apologies to Shirley if I botch it!) but she pointed out the need for more endpoints in new drug trials.  Most trials for metastatic disease look at tumor shrinkage as an endpoint.  (Makes sense, it seems like a shrinking tumor is a good thing.) But she encouraged the FDA to consider no new metastatic lesions– tumors– as an endpoint.  She said most metastatic patients feel like they can handle their current level of tumor burden, what they all fear is the spread to new organ sites.  Her dream drug would stop the tumors in place, prevent them from going anywhere new. She eloquently presented a perspective (and idea) that I found very interesting. I really love how excited she was to share her ideas with the FDA– she wants them to change the way they do the trials and she wasn’t afraid to tell them! (And she did it with the biggest smile, you could tell she reveled at the opportunity!)

The final question that impressed me: What’s’ your deal breaker? I didn’t love that the panelist started talking about hair loss, as if there were a lot of  women who A) didn’t know that chemo causes hair loss and B) wouldn’t take the needed chemo treatment if they’d known. ??? But once I got past that, I thought it was a brilliant question.  The FDA sees a list of potential side effects for every drug, but a patient’s perspectives on how to judge those side effects could make a difference in how they look at the applications. For the most part, the discussion was pretty clearly split.  First treatment to stages I-III: there are no deal breakers.  Theses women see the treatment as potentially curative and so are willing to endure most anything for a limited time to avoid feeling later like they didn’t do enough.  Once you move on to long term hormonal treatment (anti-estrogen, aromatase inhibitor, ovarian suppression), it gets tougher, this is five or ten years of a drug for a women with no evidence of metastatic disease. Young women in particular often struggle with the side effects– early menopause, sexual side effects, depression, weight gain. For some women, these side effects are so extreme that they become deal breakers and they stop treatment.  Metastatic disease is obviously a different ballgame entirely.  The Metastatic Breast Cancer Network describes the routine simply as “Scan, Treat, Repeat.” For the most part, this cycle is repeated every three months.  Women who are fortunate to live longer than the average three years after metastatic diagnosis have often undergone numerous treatment regimens. They stay on one until their disease progresses or they are unable to cope with the side effects, and then their doctors search for yet another option.  Their deal breakers are very different, and they seem to fall into two groups. The young mothers I’ve encountered with metastatic disease seem to be willing to do just about anything, to endure any side effect that is not actively threatening to claim their life before the cancer can.  They want one more day to see their babies grow up, to get to help their daughter buy a prom dress. They just want one more day, and they are willing to suffer any amount of pain to get it.  At some point, though, quality of life becomes a much larger argument. Many present, women who didn’t have little ones running around the house or children about to graduate from high school, spoke of their deal breakers– they were tired of all the side effects and would not choose a treatment that promised them little additional time at a great cost to their body.  One woman spoke about choosing a treatment that had a more convenient dosing schedule– an injection once a month over biweekly, three hour infusions.  Sadly, the financial cost of treatment was mentioned several times, one women adding that she wouldn’t want a drug that affected her so adversely that she couldn’t keep her job– and therefore her health insurance. They emphasized that quality of life could be more important than length of life in the decision making process, and while rough side effects shouldn’t keep a drug off the market, we shouldn’t settle for drugs without considering their toxicities.

I won’t say that I think this afternoon solved all the problems that exist in the treatment of breast cancer. I wasn’t sure what to expect, and frankly, didn’t expect much. I thought it would probably be the FDA’s way of checking off a box– yes, we talked to breast cancer patients. Done. I know that cancer drugs are still going to have some pretty rotten side effects, and my talking about them won’t make them disappear. Yet I feel like the FDA panelists were truly listening, and that our discussions might influence what level of side effects they find acceptable. Perhaps they will consider adding new trial endpoints, or they will require more data on dosing to stop the “more is better” philosophy that is common in cancer treatment. The meeting is over, but the public docket is open for comments until June 2, at which time they will be summarized for the permanent record. If you’d like to add your comments, please head to their page and do so. (There are some specific questions that they want patients to address, found about halfway down the page under the “Public Meeting Information” heading. You can add your comments by clicking the blue “comment now” button at the top right of the page.)

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Little Reminders | Peripheral Neuropathy after Breast Cancer Treatment

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Back when I talked about my cancer book, I mentioned that, among other things, I used it to keep track of my neuropathy symptoms.   Peripheral neuropathy– numbness in the hands and feet– is a common side effect of taxol, one of the chemo drugs I was given.  My oncologist had told me that it was something that  I needed to keep track of– it is one of the most common reasons for dose reductions or treatment delay during taxol treatment. She stressed that I shouldn’t worry about a little tingling, but to be sure to let her know if it was causing such a problem that I was dropping things or having balance problems.  (Yikes.) Fortunately, it never got that bad.  It started in my right foot– first the big toe and gradually over the eight weeks it crept all the way to my pinky toe, causing my entire fore foot to feel funny for an hour or so at a time.  Eventually, I noticed it in the fingertips on my right hand, too.  I should point out that it doesn’t hurt.  It’s not that “pins and needles” feeling when your foot falls asleep and it seriously hurts to put weight on it.  It’s more like when you’ve been outside in winter too long. (Snowy, 18 degree days like today. I’m over you, winter…) That’s how my toes felt– when you don’t really have frostbite, but even after your toes start to warm up, they still feel really weird.  A little numb, and just plain weird.

Thankfully, as my blood counts ventured up and my hair began to grow back after my last chemo infusion, the neuropathy began to subside, too.  Fewer toes and fingers were involved, it didn’t happen as often, and it didn’t last as long each time I noticed it.  I’d heard about some people who struggle with chemo-induced peripheral neuropathy for years, even forever, but figured I’d be in the lucky symptom free group since my symptoms started to dissipate so quickly.

Lately, though, I’ve been noticing that weird feeling in my right foot again. (Has it always been there and I’m just noticing it, or is it new?  Not sure.)  Usually just in the big toe and the ball of my foot, and it doesn’t last for very long.  Again, it still doesn’t hurt, and it doesn’t affect my ability to walk at all. Honestly, it’s probably the kind of thing that I wouldn’t really even notice if it weren’t associated with cancer in my mind.  But my brain has been trained to notice and note all kinds of super minor annoyances. Because cancer. Thankfully, it’s not an indicator of recurrence, it’s more like a lasting reminder of the fact that chemo does some serious damage.  Which, I guess, is just what I wanted the chemo to do, so that’s good, right?  They say (I really hate that phrase, “they say,” but there it is…) that most chemo related side effects subside relatively quickly after treatment, and rarely linger past two years.  Neuropathy is the exception.  Since mine is still hanging around, I’m guessing there will always be times when the tingling in my right foot is just another little reminder of breast cancer.

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On Sick Leave and Going Solo

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The teeny tiny lead lined room where my radioactive self got to hang out for a while before my PET scan

It’s been two years since I finished chemo, which means that I’ve had the opportunity to chat with lots of ladies who are going through it themselves since then.  Chatting about all the trips to chemo and the appointments with the oncologist and surgeons, many ladies have commented that their husband is coming with them to every single one.  I don’t usually offer anything at this point, but inevitably, they ask.  “Did your husband come with you to every appointment?”  I think they are all shocked when I answer no.  He did come with me to the appointments where they suggest someone come.  (That’s never good when a doctor suggests you not come to the appointment alone…)  He was there at the first appointment after the diagnosis with the surgeon, the “big” appointment with the oncologist where we discussed treatment strategies, and the appointment where we talked about surgical options.  And of course, he took time off anytime I had surgery.  But otherwise, I went solo to the appointments and took a friend to chemo.

So this is not the point in the story where you should feel sorry for me because my husband didn’t care enough to take the time off to come with me.  In those first “big” appointments, he came along and the doctors talked to both of us, encouraging us both to ask questions.  But breast cancer is my thing, I already speak that language.  What they were saying made sense to me, there were no surprises because I was expecting it all.  I didn’t need him to take notes so that I could look things up later (that’s a great reason to have someone come along, by the way!) and he knew that I would remember the details that I needed to pass along to him.  I dragged Sally along to a couple of the early diagnostics, but quickly learned that she mostly would have to wait a long time by herself.  The waiting areas for mammograms, MRIs, and especially PET scan keep the patients separate, so there would have been a lot of sitting solo– probably not worth burning sick leave.  And I have been blessed to have so many wonderful friends, it was easy to find someone to come along with me to chemo.  Clay always offered to go, and I know I wouldn’t have had to ask twice for him to leave work to join me.  And yet, I always assured him that I was fine to go on my own.

There are a lot of “what ifs” in cancer.  What if chemo made me really sick? What if it was too hard for me to keep up with the kids? What if it was too hard for me to take care of myself? And of course, there was always that lingering, always unspoken, “what if.”  What if the treatments didn’t work and I finally ended up with my body as a battleground, managing the effects of ever increasing treatments while the cancer wreaked havoc on my vital organs?  My liver, my bones, my brain? Then I would need help.  Lots of help.

I can remember years ago being in the choir room at church, where federal workers were asked to consider donating leave to a member whose husband was nearing the end of his life.  She was running out of paid sick leave, but other employees could transfer theirs so she could continue to be paid while she stayed at home with her dying husband.  That memory floated in and out of my mind all throughout my treatment.  There might be times when I would really need Clay to drive me to appointments, to keep track of medications, just to help me through my day.  I hated the idea that he might feel torn between being able to provide for our family and being able to care for our family.  I wanted him to go to work while he could, so that he didn’t feel like he had to if I really needed him.

Didn’t mean for this post to be a downer.  I was happy going to the appointments on my own.  I was caught up on local interest stories, the latest fashion, and the newest makeup trends thanks to all the magazines I read in waiting rooms.  (I’m a bit behind the times now, I’m afraid!) I really liked all my doctors, and was happy to chat with them. As soon as I left, I would call Clay, my mom, and Sally to give them all the latest updates.  And then I would usually make one more call to whomever I was meeting for coffee or lunch to let them know I was on my way. Because even though I didn’t mind seeing the doctor solo, hanging out with a friend is always my favorite thing!

One thing to remember, though, especially if you are going through treatment– everyone is different, so we all “do cancer” differently.  I loved taking a girlfriend along to chemo– three or four hours to chat and catch up, discuss Downton Abbey, look at magazines, and giggle like girls do. I’ve had friends who loved spending that time with their husbands, looking at it almost like date time.  Maybe not the most romantic, but time is time, my friends.  And I’ve had friends (mostly those with toddlers at home!) who cherished being able to go to chemo completely alone. We don’t all have to do it the same to do it well.

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Happy Birthday to Me | NARS Lip Pencils from Sephora

 

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My birthday is in December– quite frankly, I can’t believe that I’m 38. That just sounds older than I feel. Not that I’m obsessing about it at all, but some nice presents surely make it better!  I do love shopping at Nordstrom, but when it comes to cosmetics, I’m starting to become a Sephora convert.  They have a similar generous return policy, and they have a beauty insiders club that lets you earn points for really nice rewards– smaller sizes of some of their best products– things I actually want!  But best of all are the annual birthday gifts.  I discovered several of the products that I now love and faithfully buy that way– Watts Up highlighter by Benefit and Sugar Fresh lip balm are probably my favorite birthday gifts.  Until this year.

I’m a huge fan of NARS cosmetics– they are highly pigmented and deliver deep, lasting color.  The velvet matte pencil in Cruella is the red lip color I’ve been looking for– a bold red with just enough depth so that it’s not obnoxiously bright.  The satin lip pencil in Rikugien is more of a neutral, glossy color that’s a great everyday staple.  Two new lip colors– a perfect red and a glossy neutral– make me a pretty happy birthday girl.  Happy birthday to me indeed!

*This is the 2015 birthday gift– even though I was celebrating my 2014 birthday, it was January before I made it in to Sephora. Having noticed my love for NARS, the sales associate let me choose, and of course I went home with this one!

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Me and Ibuprofen? It’s Complicated | Pain Relief after Breast Cancer

ibuprofenI woke up the other morning with a headache. Back in the day, I’d have groaned about it while I walked to the kitchen, popped a few ibuprofen, and then I’d get on with my day. But now? Well, it’s complicated.  To be perfectly honest, I’ve always had the occasional headache, only rarely would they last after I took a few ibuprofen. The last time I saw my oncologist, she asked about headaches and I told her that I have them occasionally. Of course, she asked whether they went away when I took ibuprofen, and I had to admit that I don’t really take it any more. I knew she wanted to know because a headache that is controlled by over the counter meds doesn’t indicate a scan-worthy concern.

So why won’t I take ibuprofen? It’s not because I’m anti-meds. Of course, I know they can be misused and abused, but I’ve always been one to (responsibly, of course) embrace whatever the pharmaceutical industry can give me. (Narcotics, an ambien, and an epidural made for a nearly blissful birth experience!) But since I had cancer, I hesitate to take something even as mundane as ibuprofen.  Not because I’m tired of taking pills and just don’t want to anymore. Though I think that’s a pretty reasonable reaction.  But once she had asked, I had to admit the reason out loud.  I want to feel the pain.  Not because I want to suffer.  But because I want to know just how much my head hurt, and for how long.  I feel like if it’s the start of a problem, I want to know right away.  Of course, my oncologist told me what I knew deep down. I should take the meds.  What I need to worry about is pain that can’t be controlled by the meds or that lasts for a couple of weeks.

So the other morning when I woke up with a headache? A quick check of my P-tracker (yes, there’s an app for that) told me that it was most certainly a PMS headache– something I’ve dealt with since long before I had breast cancer.  So I took a deep breath, told myself not to worry about it, and swallowed my ibuprofen. And what do you know? The headache went away.

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